The next meeting of our new North West nystagmus network will take place on Saturday 7 September in central Manchester, 10am to 12 noon.
Nystagmus Network trustee, Marie Turnbull will once again be your host .
We look forward to welcoming back the families and adults who came along last time and to seeing some new faces, too.
New members are very welcome. For details, please contact us today.
With all those job titles beginning with ‘O’ it can be a bit confusing trying to work out who does what at the eye clinic. Here’s a handy guide from the British and Irish Orthoptic Society, BIOS:
Aside from Orthoptists, there are a number of other professions working in eye health. Unhelpfully they also all begin with ‘O’! This is our brief guide to the main differences between Orthoptists, Optometrists and Ophthalmologists.
Orthoptists are the experts in diagnosing and treating defects in eye movement and problems with how the eyes work together, called binocular vision. These can be caused by issues with the muscles around the eyes or defects in the nerves enabling the brain to communicate with the eyes.
They see patients with a wide range of conditions affecting their vision. They are trained to offer a range of treatments, including eye patches, eye exercises, prisms or glasses. They also commonly work with patients with neurological conditions, such as stroke, brain tumours or multiple sclerosis.
The majority of Orthoptists are employed by the NHS in hospitals or community eye services. Although many also work in rehabilitation centres and special and mainstream schools. They will often work in wider eye care teams, alongside Ophthalmologists and sometimes Optometrists.
You can find out more about Orthoptists here.
Ophthalmologists are medically trained doctors that specialise in diseases and injuries in and around the eye. They act both as physicians, diagnosing and prescribing treatments, and surgeons, performing operations. They typically work in eye hospitals and hospital eye departments, often alongside Orthoptists.
Orthoptists will often work collaboratively with Ophthalmologists to investigate and manage diseases of the eyes, with Orthoptists specialising in non-surgical treatment. While Ophthalmologists, as medical doctors, are able to perform complex surgery prescribe a wider range of medicines.
More information can be found on the Royal College of Ophthalmologists website.
Optometrists are trained to examine the eyes to detect defects in vision, signs of injury, ocular diseases or abnormality. They also identify the signs of problems with general health, such as diabetes of high blood pressure. All Optometrists are able to offer clinical advice, prescribe glasses or contact lenses and refer patients for further treatment. They typically work in high street opticians, carrying out eye examinations, but some also work in hospitals or community clinics.
Whereas an Orthoptist is concerned with how the eyes work together and interact with the brain to create vision, Optometrists are primarily focused on the examination of the eye itself.
More information can be found on the College of Optometrists website.
Dispensing opticians are trained to advise on and fit glasses according to a prescription provided by an Optometrist or specialist Ophthalmologist. They are skilled in offering advice on lenses for specific purposes, such as night driving, UV protection or sports and safety wear.
More information can be found on the Association of Dispensing Opticians website.
Parent Power, funded by the National Lottery Community Fund
PLEASE NOTE – BOOKING IS NOW CLOSED
The Nystagmus Network is now inviting parents and carers to attend the first of our Parent Power education workshops.
Location: Southampton
Date: Saturday 12 October
Time: 10am to 2pm
Lunch will be provided. This is an adults only event.
The aim of the project is to empower parents and carers with legally based information on how to advocate for their children with nystagmus to ensure they receive appropriate support across all stages of education.
Led by our 2 IPSEA trained education advocates, delegates will learn about the rights of their children under law and receive advice on how to access the range of SEN support available to visually impaired children, including an explanation of the EHC plan process.
The workshops will also cover practical information on exam access arrangements, reading resources and transition plans. Content will be tailored to the age and educational stage of your child.
Following the formal input of the day, local parents and carers will have the opportunity to network with each other and also meet local adults living with nystagmus.
There will be more news about 4 future dates and locations across England very soon.
The Nystagmus Network is delighted to announce that we have been awarded funding by the Community Fund for a brand new project, called Parent Power.
The aim of the project is to empower parents and carers to advocate for their children with nystagmus to ensure they access appropriate educational support in school or early years settings.
Parents will be recruited from our membership and the wider nystagmus community to receive information on the rights of their children under the SEND Code of Practice, advice on how to access the full range of services available to visually impaired children and an explanation of the EHC plan application process.
At each of 5 regionally based training sessions in the academic year 2019/20 local parents and carers will come together to build a mutually supportive network so that they are able to provide and enjoy peer to peer support whilst working to support their own child.
As a result of parental empowerment, children and young people with nystagmus will receive appropriate, timely support in education to enable them to achieve their expected potential, were they not visually impaired, to follow their chosen career path and make a valid contribution to their local communities.
There will be more news about the dates and locations of our first Parent Power workshops very soon.
Often it’s a parent, close friend or family member who first discovers that there’s something different about a baby’s eyes. It could be nystagmus.
Do you know the milestones in a child’s eye development?
Here’s a handy guide from Look After Your Eyes.
The Nystagmus Network is contacted more and more often by people living with Acquired Nystagmus. Experience of this condition is very different from Congenital Nystagmus in a number of ways.
Often people have had no previous sight problems at all when the nystagmus develops and the changes in their quality of life can be quite devastating.
The Nystagmus Network is setting up a new peer to peer support group for people with AN. It doesn’t matter whether you’re newly diagnosed or have been living with the condition for years. You’re welcome to join us to share your concerns, your highs and lows and maybe work together to find some solutions.
The group is lead by Nystagmus Network’s Sue and our fabulous new volunteer, Patricia. We will meet virtually, initially, through email or Whatsapp and we hope to set up meetings in the future.
If you or someone you know could benefit from chatting with others living with Acquired Nystagmus and would like to join our group, please contact us today. There is no charge and everyone is welcome.
A guest post from our Open Day 2019 keynote speaker, Daniel Williams, founder of Visualise Training and Consultancy:
Losing eyesight is both challenging and difficult, scary and disconcerting. Having to change the way you do things, adapting to new challenges and learn new skills can be exhausting. Perhaps one of the most difficult aspects of eyesight deterioration is the uncertainty around employment. Sometimes it may be hard to tell somebody at work about your sight loss for fear of losing your job and you may struggle with tasks and suffer from eye strain or headaches because you are trying so hard to cope. Or, you could be afraid to tell your manager in case they think that you can no longer carry out your daily tasks as efficiently as you used to and this may lead to unemployment and all the uncertainty and ambiguity this may bring.
Let’s think about the common symptoms of sight loss, and how experiencing these symptoms may make you feel:
Experiencing just one of these symptoms may make you feel worried, uncomfortable or anxious. If not checked, in time, these feelings may escalate and cause you to struggle in both your work life and private life. But it is important to understand that help is available and that you don’t have to be totally blind to get help. In fact, the vast majority of visually impaired people in full-time employment have partial or useful vision. Don’t give up your job, just because you’ve lost your vision.
The Equality ACT 2010 protects you against disability discrimination. Your employer has a duty to make reasonable adjustments.
Visualise Training and Consultancy can carry out a work-based assessment to assess your needs and not only give you and your employer ideas on how to make your work life easier, but they will also write a full report, detailing any special equipment or alterations that can be made.
Let’s take a look at the four most common problems that may occur in the workplace for people who are losing or have lost some of their eyesight. Alongside the problem, we’ll look at possible solutions.
“I can’t see my computer screen very well any more…”
This is a common issue that can be tackled in a number of ways. You can use a bigger screen, use an anti-glare filter on your screen or change the colour scheme and text size within Windows. Failing this, a special screen magnifying programme can be used to enlarge what’s on the screen and change the colours and contrast. In some cases, a special piece of screen reading software such as Jaws or NVDA can be used. This will read-out what you type and tell you what is on the screen. Some people may use a mixture of screen reading software and screen magnification software, others may exclusively use screen reading software.
“I’m finding print difficult to read…”
A hand-held magnifier can be used to enlarge print, but technology can also be used. A CCTV/ video magnifier can make reading easier, as can coloured filters and smart phone apps such as KNFB Reader and SeeingAI. Sometimes, scanning a document and reading it on a screen suits some people, as does experimenting with different lighting. In cases where the print is too challenging for technology to tackle, Access To Work may pay for a PA or Support Worker to help you read documents.
“I suffer from headaches and eye strain…”
If you try to exceed the limit of your vision it can be very tiring. Sometimes, headaches and eye fatigue can be environmental, caused by bright, fluorescent overhead lighting or poor task lighting. Often, tweaks to the environment and regular breaks can help prevent discomfort. Also, a good quality, consistent light source can make a lot of difference.
“My sighted colleagues don’t know how to support me in the best way”
Remember your colleagues may not have ever worked with someone with reduced vision. So be loud and proud, tell them what you need and how best to communicate with you. They may also benefit from visual impairment awareness training to understand how best to support employees with sight loss.
“I can no longer drive…”
Losing your driving license because of sight loss is very common and very worrying. However, there are ways to tackle the problem. Discounted rail and bus travel can be acquired with disability passes, making travel to work on public transport cheaper. However, if you have to travel to appointments within your role, or if using public transport is impractical, Access To Work may pay for taxis. This makes life a great deal easier and eliminates some stress.
These problems and more can cause high levels of discomfort, stress and anxiety. It is important to remember that help is available, and that communication is often the key to starting the journey to positivity and a sense of equilibrium. Don’t suffer in silence. The Equality Act 2010 is on your side:
The Equality Act 2010 legally protects people from discrimination in the workplace and in wider society
It replaced previous anti-discrimination laws with a single Act, making the law easier to understand and strengthening protection in some situations. It sets out the different ways in which it’s unlawful to treat someone.”
To book a workplace assessment, please visit Visualise Training and Consultancy.
In a recent article published by Vision UK, Founder of Visualise Training and Consultancy, Daniel Williams, discusses the importance of referring patients from the hospital eye clinic or High Street optician’s on to local or national services offering condition specific support and information.
It’s time for your regular appointment at your local high street optician. Each year you receive a reminder letter and you go along feeling relaxed and ready to enjoy the rest of your day after your appointment is over. Thousands of people do this every day and many thousands do come away feeling happy and relieved and go on to shop or see a friend, putting the appointment behind them for another six or twelve months.
Read the rest of the article, here.
Meet Daniel at Open Day 2019.
The notes below are taken from an article recently published in the British and Irish Othoptic Journal, BIOJ.
Arguments for the Adoption of a Nystagmus Care Pathway
Authors: Christopher M Harris, Julie Owen, John Sanders
In the UK, there are six specialist nystagmus centres with eye tracking facilities, but nystagmus is not a rare condition.
With at least 1 in 1,000 babies being born with congenital nystagmus and many more children and adults acquiring nystagmus beyond early infancy there is clearly a need for greater capacity.
Not all new cases of nystagmus are thoroughly investigated, according to previous anecdotal evidence from people contacting Nystagmus Network.
Patients with nystagmus are usually referred to their local eye clinic for further investigations. There is, however, no standard flow-chart or accepted strategy for investigation.
This is where the plan for a Nystagmus Care Pathway comes in.
Read the full article here.
HAVE YOUR SAY – please contact us with your recent experience of nystagmus care at the point of diagnosis.
Man on a Mission with Low Vision, visually impaired entrepreneur Daniel Williams is working to raise awareness of the value to business of meeting the needs of visually impaired customers and employees.
Founder of Visualise Training, Daniel is working hard to convince the business world one company at a time.
Members of the Nystagmus Network will have the opportunity to meet Daniel at Open Day 2019 in Cardiff and hear him speak about his career, his passion for the rights of everyone with low vision, and living with sight loss himself.
Read Daniel’s latest article ‘The Business Case for Low Vision’, published by Visionary, here.
